I’m an old timer returning for some advice/reassurance. A little background on me: I’ve been twitching for about 14 years (33 yrs old). My twitches were widespread (including constant cramping /twitching in my feet and tongue). No weakness, maybe perceived at times/shakey arms and legs.

I visited multiple neuros including an ALS specialist out of UAMS. Had a clean EMG, strength tests were fine, brisk reflexes. Was diagnosed with BFS (around 2014). My twitches and cramping have waxed and waned over the past decade, but no major complications as one would expect.

About a month ago I noticed a weird sensation in my left arm, leg, and side of my face. This sensation can be described as a buzzing or vibrating feeling one has when their limb is about to fall asleep. I would only have this feeling if my leg hit something (weird I know) or moving my leg up and down. The thing that worried me the most was the tingling feeling on left side of my face. Fearing I might be having or had a stroke, I visited my GP. She did a neuro exam and noted everything was fine, but did mention the reflex in my left arm was a little slow. This concerned me a bit— I should mention that she had a hard time finding the “right” spot, was not using a traditional “hammer” (was something she grabbed off the table...), and when she made contact, I didn’t have that jerk/reflex feeling one would expect to have (I.e., she may have performed the test wrong).

About a week later (two weeks ago today), I started having intense tongue twitching (more so than in the past). The most alarming thing I’ve noticed is it feels like my tongue tightens especially when talking (almost like it forcefully sinks to the bottom of my mouth). This would cause my speech to sound odd and at times slurred. I’m not sure if this speech problem is from the tightening or near cramping of the muscles in my tongue. Considering the combined non-stop twitching in my tongue/mouth area, I’m extremely concerned. At times I’ve refrained from talking, just to avoid the sensation or perception of my voice. I should also mention the tingling feeling has stopped in my left arm and face.

As of today, I’ve completely convinced myself I have bulbar. I continue to have body wide twitching, including my throat and feet. Throat and overall swallowing feel a bit tight/strained. Twitches are most apparent in my upper body area (chest/throat/tongue). These areas feel strained or weak (these “strained” feelings came on in a matter of days (is this possible with bulbar?)). No apparent weakness in arms and legs; though, they are a bit shaky and everything has a “cramping” feeling.

I have an appointment with a new neuro next Friday and a MRI in the works. I’m completely consumed by this since my symptoms are telling a worrisome story.

Any advice or similar stories would really help me through this. I’m wondering if I should go to the ER, but I’m not too sure what good it would do.

One thing Ive noticed after having this since 05 that when worries and stress go up so does the disease activity. From May till mid October I was in BFS hell. Worse then ever. Started to think like you. The end is near. Funny no matter how many times Ive been told you do not have *** we convince ourselves the doctors are missing something. I actually took a short course of Xanax. Never had it before. Quite calming . After two weeks symptoms stared to wane. Gone till this past week. They crept back in. I"m not giving in to them. No Xanax yet but never rule it out. BFS sucks. We all know. You are not dying. Relax see the Dr and try and move on.